The strangest place this 5 and 1/2 ye... - Advanced Prostate...

Advanced Prostate Cancer

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The strangest place this 5 and 1/2 year journey has taken me to date.

Costarica1961 profile image

I was diagnosed in june of 2016 with a 9 gleason score. Had rad prostectomy, then salvage. Followed by 18mos of milage from zytiga and a Brief minute with xtandi, until it failed. Onward, to a couple of clinical trials, Bombesin which failed miserbly putting me in the hospital. Then the harpoon trial. A no go as well. Then, 27 sessions of chemo. Until my psa shot up to 561, I then took a trip to Nebraska to Dr lukes impressive clinic. He prescribed a formerly prescribed xtandi and zytiga but as a combo in mid November, my psa dropped to 1.6 in 5 weeks. Wow happy days are here again. I also felt fantastic in comparison too the ugly chemo days. Today my psa creeped a bit to 3.6 its unsettleling but not Tragic considering where I have been. Currently waiting for the Lu 177 treatment, although I am still unsure when it will become available, My question is whats the benefits of the already FDA approved radium 223 in comparison to Lu 177. According to my onc, there is a small difference in median survival, And overall results are similar. Is this true? I dont want too wait until my psa goes through the roof, with few options on the table. Does anyone know the big difference.... they are both radiopharms and target tumors etc. Thankyou in advance. Oh thats spicy vietnamese beef noodle soup. Yum.

54 Replies

Yes, they are both about equal. Xofigo is only for bone metastases. If you failed Harpoon (which is PSMA-targeted), your chances of success may be better with Xofigo than with Lu177PSMA617.

Thank-you Tall - Allen. Does Lu 177 have a better efect on Lowering Psa. If all things were equal.

You have to account for the fact that Harpoon (a PSMA-based BiTE) didn't work. You are trying to kill the cancer, not treat PSA.

Sometimes that is hard to remember, considering such emphasis is placed on Psa. I know that is correct.. thankyou as always.

No medical info or advice but looks like we are simpatico on the Asian soups. Plenty of umami hovering here brother … I eat some version of this almost daily. I’m salivating just thinking about it yayahahahaya yayahahahaya

Hope the new year is a good one for you ….

Bonito Miso w/ crab dumplings, seaweed, udon noodles, chard greens and fresh shallot
CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Crab dumplings ? I am jealous. ha

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Yayahahahaya and boy they are delicious too. They are steamed in their buns, in a little stove top steamer, and dropped into the miso. So much umami in that miso paste, an old shoe sole would probably taste good dropped in there.

❤️❤️❤️

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Wish I had a picture handy.I have my miso, by bonito, my seaweed, my chard, my kale, my fried tofu, and sesame seeds on top.

Where is my crab darn it !

Actually sometimes add some chunks of wild caught salmon although that is best reserved for rice soup. Gives it a nice natural saltiness to break up the blandness of rice soup.

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

Mmm making me hungry now! 😂✌️

Kaliber profile image
Kaliber in reply to CAMPSOUPS

I like my tofu firm and sometimes browned in a seasoned oil wok before adding to my miso. I dearly love shiitake and and enoki shrooms in there too. Got a huge Asian supermarket just on the far corner of my block. The seafood, shroom , dumpling and noodle layout in that place is brain numbing. Their layout of locally grown fresh shrooms is eye popping and surprisingly inexpensive . That’s the benefits of living in a town with such large Asian populations. Yayahahahaya

❤️❤️❤️

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Cool ! Yea I forgot but I have shrooms in my miso soup too. Normally Shitake. Use Enoki in other dishes. Don't you like how Enoki "cracks" when you bite. Gets stuck between teeth pretty well too lol.

The fried tofu is Aburaage. Buy it frozen. Cut it in strips and add to soup.

justonecookbook.com/aburaage/

We are low on supplies tonight and wife wants to use what we have.

She's going to make some bean sprout, grass fed ground beef, and curry concoction.

Doesn't sound so good but actually not bad.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Yea it’s kinda shocking the different taste qualities that beef can have, depending upon where it grazes. Its only in recent times that I’ve zeroed in on that ( thinking they are all the same ), I knew it mattered in cheese but not in meat as much as it does yayahahahaya. Pretty interesting stuff. Curry is , seemingly, a world of its own. We have a number of Indian restaurants and buffets here and I’ve gone through the line on a few of them. I know absolutely nothing about curry but it’s intriguing. My Malaysian buddy, Victor, died of Covid right before Christmas this year …. He was my Curry guide . Seems like the same dish can vary dramatically if it’s Northern Indian style or southern Indian style as well. Complicated stuff but delicious yayahahahaya yayahahahaya.

I’ve keto dieted for a couple of decades but ignored or just plain didn’t realize the muscle wasting effect that keto brings to the table … then when combined with adt’s zero T muscle wasting, well the combination can be disastrous without an exercise regimen to go with it. I didn’t exercise to counteract the muscle wasting and paid for it. I’m exercising “ now “ and trying to correct for the mistake ….. exercise brings down my bg as well. Kinda late in the game to figure all this stuff out tho.

I’d never thought of frozen tofu, never even heard of it yayahahahaya I’ll look for it next time I’m in the store and check it out. Learn something new every day . 😁😁😁😁

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Yea that particular frozen tofu if you miss the good old tasty bad for you fried flavor. It gives off that flavor.

We both and others here have a wide berth of flavor likes.

You are right about the many flavors and styles depending on where in India it comes from.

When I crave I usually settle on Chicken Tikka Masala ( anyone who is a purist will laugh at that because it probably won't be found in India--kind of a for the Westerners thing) and good old chicken curry.

A lot of side dishes to choose from too that I like.

About 20 years ago customer in LA of Indian descent took me to lunch and ordered a spread of about a dozen items. Got to sample everything. Great experience. Then we stopped at a shop and he had the owner make up this "thing" consisting of leaves, flowers, all kinds of stuff including a little tobacco and I put it in my mouth between my gums and my cheek.

It was like having perfume in my mouth. Interesting but not great ha.

He said I was a trooper cause I kept it in my mouth for 30 minutes.

Where was I. Just got back from blood draw (track liver function since Zytiga can have effect). Sorry long reply.

So I think I told you I was in Fresno servicing customers printing press about 3 times 1999 and around 2005-2007.

I wanted a sit down restaurant for lunch and (look this up) went to McCoy's coffee shop. Lots of cowboy boots and I thought this must be the so called California Cowboy thing lol.

The first trip I flew in and stayed at hotel next to Fresno airport and things looked pretty diverse and urban and that was my image of Fresno.

The last 2 trips I flew into Oakland and drove to Fresno (nice drive by the way) and went directly to that South Fresno area where the customer was and found it to not look as diverse.

One of the trips I had time to drive around the actual city. Very interesting. Old buildings.

My work trips were always under other's timelines. Seeing Yosemite off in the distance and not being able to go there was a bummer.

I digress. If my brain is this scattered imagine if I tried to write a book.

I was disappointed that I didn't have a picture of my miso soup yesterday. Here's a picture of that ground beef, bean sprout, curry thing my wife came up with back in the day when we were struggling financially under a 20% pay cut ha.

(for those who may scold me--grass fed beef and bean sprouts have a lot of vitamin C lol)

I saw your replies a couple months ago about your body giving out. I'm glad your seeing some improvement ❤️. You had me worried. Not easy I'm sure..Keep up the fight man.

cheap curry dish
Kaliber profile image
Kaliber in reply to CAMPSOUPS

Thank goodness for the diversity of foodies and places like fresno where diversity reins supreme. It’s kinda an undiscovered jewel in that respect. Media has gotten out the word to a large degree and we’re seeing lots of weekender foodie jaunts from the coastal metros these days. Brew pubs and speciality bars have exploded lately. Just like anything else , too much publicity will likely screw everything up yayahahahaya. We have a Mexican food store chain called Vallarta,( Fresno is 64% Hispanic ) the size of a super Walmart, several R- N Asian “ super “ markets … Indian food stores and tons more. Those offer selections of ethnic foods and seafoods that are stunning and require many trips back to feel like you are “ getting a handle “ on things yayahahahaya yayahahahaya. All mysterious and wonderful. I love it all …but my specialities are Italian and French charcuterie , French wines and Asian seafood and miso’s. I like food truck’ in and , like S.F. , Fresno has a big food truck scene. Covid has screwed up that scene tho …. Its all good. For us cancer guys with mobility issues, being a foodie is a great way to add to your QOL life and distract from some of the negatives of stage 4.

Yea I had that nasty body parts fiasco, my left leg mainly …. I found out that I could work my way through it tho … and I’ve rehabbed my damage to better than before … dusted off the ( mainly unused ) home gym and got busy and I feel more upbeat and rehabbed now … things looking up for spring. Spring happens here in the first week or two of February. The fields will literally explode into the agriculture bloom (/which lasts several months ) … time to hit the extensive luxury hike & bike trails and get out and smell the roses while I still can. Even before I hurt my leg, I needed “ some “ help with my mobility due to adt … but I’ve got my etrike and hitch lift and I’m good to go buddy. Yayahahahaya. I’m really looking forward to this spring, almost like no other. One thing cancer and all these stupid personal malfunctions have taught me is to get in there and soak up the goodness while I’m able.

I do “ drones “ too. For cancer guys with mobility issues, flying drones is great , immersive, fun and very rewarding. I got my federal uav pilot certification on the web and flying drones is ultra kewl when done FPV ( first person view ) … it feels like you are right in the drone flying it . You can send your drone camera platform off several miles to explore as you wish and you see everything up close and personal. Places you could never go with limited mobility become easy with a fpv drone. Fun stuff for guys like us.

💪💪💪😁😁😁❤️❤️❤️

Flying FPV DJI phantom 4 pro.
Kaliber profile image
Kaliber in reply to Kaliber

Drones can be a thrilling way to add to your QOL , especially if your mobility isn’t at its best.

DJI phantom 4 with fpv.
CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Excellent. No kidding I can relate to that.Even though I'm a little more mobile than you.

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Awesome.Spring in February.

I was just thinking how it will be late April here maybe early May before it gets that way and same thing. Thought about how I had a good time last summer and if I feel as good as I do now or even if I don't ha. I want to make it a great summer.

I was on the Midway. F4 Phantoms. (I was a Corpsman though not a pilot ha).

The muscle cars of fighter jets. Raw power not overly tech'd out.

Would stand behind a heat shield on the flight deck to peak at them taking off being careful not to get burnt. The afterburners were awesome.

I think I said this here before. Guy came down to sick bay one day. The minute he stuck his head in the door he said "I only looked for a second".

His face was bright red from looking at the afterburner.

It was funny but of course not funny too.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

I’ve never been right behind those puppies taking off but I e been close nearby. Even with the earphones on , the sound is enormous and the ground shakes hard when the burners kick in. Pure adrenaline inducing. I can’t begin to imagine what it feels like sitting in the drivers seat and kicking in the burners. The rush would be enormous. I’d have loved to try that out when my health was better … when you’ve done “ That “ … you’ve got something to crow about.

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Yea its some wild stuff all the way to being trained to force yourself to pee in your flight suit before you hit the eject button.

Of all things I was in the back of a 2 seat individual canopy for myself and the pilot T-34 prop trainer plane in the 70's joy ride by the co-worker who had acrobat license.

G Force even for that antique coming up from the bottom of a loop peeled my face off lol.

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Yea its like standing on a steel deck when a rocket ship fires off.Same effect as witnessing extreme freaks of nature/weather, earthquakes.

It awakens a primitive part of your brain or something.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

It really does …of course most parts of my brain are primitive yayahahahaya

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

That has got to be a blast.I might have a bit of a windfall before I croak. That drone set up is on my list.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Used drones are very affordable on eBay . many new lines of drones are under $200 or less, even less used. Takes zero skill to fly them ,they practically fly themselves. more fun than a sack of snakes. Yayahahahaya

Lulu700 profile image
Lulu700 in reply to Kaliber

Whoah! Man. I love that Japanese food!❤️👏👏

Kaliber profile image
Kaliber in reply to Lulu700

I hear that brother Scott.

❤️❤️❤️

Lulu700 profile image
Lulu700 in reply to Kaliber

My mom took me to eat at nicos on van ness in 1973 . Sashimi 20 yrs before sushi popped in the states . In the 80’s 90’s sushi was my go to.. IMO there is Nothing better than fresh that day ahi poke in Hi!

CAMPSOUPS profile image
CAMPSOUPS in reply to Lulu700

My first sashimi in Japan in 1975. Heaven. Hooked.

Lulu700 profile image
Lulu700 in reply to CAMPSOUPS

Oh yah! 🥳🥂🤙🏽

Lulu700 profile image
Lulu700 in reply to Lulu700

Oragato mr Robato ! I’d really love to see a Japan ?

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Sashimi is utterly delicious … agree 100% buddy.

❤️❤️❤️

Kaliber profile image
Kaliber in reply to Lulu700

Fresno has an enormous population of Cambodian, Hmong, and many other Asian peoples. Also Pakistani and Indian and Sikhs . DoorDash has dozens of listings for Asian foods. I too love sashimi , dim- dum, sushi , octopus salad , kimchi, etc. . Both Asian street food and traditional restaurants are all over town. Poke is extremely popular too. Poke and pho specialty restaurants all over the place. . Yayahahahaya In the last 8 - 11 days alone, I’ve eaten wonton soup, shrimp fried rice, prok chow mein, the miso in the photo, beef udon, 3 piece - kinds sashimi, two kinds of California rolls shushi and chicken teriyaki Don. it’s become too easy , just pick up my iPad, touch the screen in a few places and wait 30 minutes and presto its sitting right on my front porch. it’s WAY too easy to be bad. Yayahahahaya. Those pictures from Cheesecake Factory are irresistible.

Covid has become an “ alarming crisis “ here in Central California right now … infection rate off the charts at record levels. Shockingly dangerous outside around people. No eating out around here for a long while. Gotta DoorDash if you want any restaurant food, and DoorDash makes it WAY too easy.

💪💪💪😂😂😂

CAMPSOUPS profile image
CAMPSOUPS in reply to Kaliber

Its all good. The food ha.But yea not the Covid. Geez. Positivity rates of 19% ? Or more!

Weren't we shooting for positivity below 3% a year or so ago before we would loosen restrictions.

We're curbside for groceries etc. and like you order delivery.

We led a chill life prior as it was so this isnt as hard on us as younger ones with the need to be out and about.

Kaliber profile image
Kaliber in reply to CAMPSOUPS

Fresno county is a VERY red place, only about 43% of residents even have any jabs at all. Not as many people getting killed by Covid as earlier but having the biggest amount of hospitalizations ever. Huge amount of sick people in these parts . Its a scary mess out there. I’m ready for things to get back to the way they used to be.

❤️❤️❤️

WSOPeddie profile image
WSOPeddie in reply to Kaliber

Sad when politics influence health decisions. At least we don't have that with prostate cancer treatments.

Kaliber profile image
Kaliber in reply to WSOPeddie

Politics are verboten here or I’d respond to this , but it’s sad to see so much unnecessary sickness and so many deaths.

Just say’in ❤️❤️😂

CAMPSOUPS profile image
CAMPSOUPS in reply to WSOPeddie

Never thought about it that way but yea. Man that would be a disaster.

Lulu700 profile image
Lulu700 in reply to Kaliber

I love the Cali Asian foods and people . I was in orange co San Clemente and friends in Huntington and Westminster and of course little Saigon is there . Good foods . None of that here buddy . Sorry to hear about the covid there. It just keeps getting crazier each year . We haven’t eaten out since covid began . We ‘re basically locked down at the ranch . It’s beautiful and who cares . I’ve been in worse places in life . My bro came and stayed with his wife for two days . It really made me happy . We have the two brothers in between us in age both gone from none stop parting basically . He is my only caring relative left . Th3 only one that’s known me from birth . He’s 71 and running strong . No pc . Take care ,peace and love ,hola to hammer❤️

Kaliber profile image
Kaliber in reply to Lulu700

It sounds great, spending time with your family. Where you live is out of town and much safer, thank goodness buddy. Fresher air too yayahahahaya gotta love that. The trouble with so much concentrated population that we have out here is zillions more Covid bugs ….. yikes.

❤️❤️❤️

Lulu700 profile image
Lulu700 in reply to Kaliber

I fled Cali in 1982 . Just too many people clumped up in herds ….but now it’s shaking to the core with issues ..I’m with you . More than ready for normalcy . I just hope that “this” ain’t the new norm? 🏜❤️

Lulu700 profile image
Lulu700 in reply to Kaliber

Mmmm😋

That looks delicious. I have been eating many asian soups and variations since 1979. Its flavorful and lighter than a burger and fries and healthy. Love it.

That pho broth is good ! I love it! I feel like you keep getting hit by the stick . Hang in costa!There is Nothing light hearted about fighting APC . It’s a bitch from A to Z … IMO 😎✌️

Actually I feel pretty fortunate, everybody here has a battle. Mine probaly much different, thank you, I hope your doing well.

Thanks costa . Take care brother !🙏

It’s my understanding that xofigo may effect bone marrow more than Lu-PSMA, although they both have an effect. Perhaps others have more information.

TA makes a good point that if one PSMA ligand therapy didn’t show good results, then another may not either.

CAMPSOUPS profile image
CAMPSOUPS in reply to Javelin18

As I might be in line for RA-223 or LU-177 someday I think about the bone marrow effect/dilema.

I still don't know of any way to fortify if you will ones marrow prior to treatment to try to lessen the possibility of degradation.

Many here are anxiously waiting for the approval and availability of LU177.

I have my own mixed expectations as to its effectiveness based on previous posts from fellow warriors who tried it and are no longer with us, like Great John from Florida and Patrick Turner from Australia (where the treatment is approved and available). Both had posted about their journeys on this site.

I had the opportunity to ask questions of Dr Michael Hoffman, a pioneer LU177 researcher from Australia, who recently participated in an online meeting/lecture. He is one of the first who has conducted a clinical trial using this treatment. I was able to ask him about the results, which followed patients for 5 years. I don't specifically recall how many but believe it was around 100 participants. I asked how many were still alive after 5 years. The answer was disappointedly none.

On the positive side, while LU 177 was not shown to be a cure, it did potentially provide long term survival benefit.

Here as a report what happened to the patients Dr. Hofman rejected for his trial. The median survival was 2.5 months.

euoncology.europeanurology....

The trial included very advanced patients and I think you cannot expect LU177 to cure these. In general Lu177 will not cure but it is an effective therapy.

Grumpyswife profile image
Grumpyswife in reply to GP24

One has to pay to read the whole article. It is difficult to follow the numbers and the 2.5 month survival may have been for those who died on follow up.

GP24 profile image
GP24 in reply to Grumpyswife

The abstract mentions that the group of rejected patients consisted of 16 patients. 15 of these died with a median of 2.5 months. In the full text the authors mention: "Our study cohort of men with advanced mCRPC and either low PSMA expression or discordant FDG-avid had poor prognosis, with median OS of 2.5 mo."

I believe Cleodman tried one session of Lu as well. I’m hoping to see positive trial results from “early-Lu” as an option before chemo.

Very interesting about combining Zytiga with Xtandi. When I asked my MO about this he said there is no proof that it works better than just taking one of them. I was on Zytiga for two months and my PSA went from 20 to 126 which led me to Taxotere infusions( which did not work). I am now on Lynparza and my PSA has increased to 160.Anybody else found success combining Zytiga and Xtandi?

Any significant side effects?

Good to hear, especially the parts about PSA 561 then later 3.6, and 'felt fantastic'. Down and up. And that soup looks super good.

Thankyou. yes I am happy, although I have learned not to get to high or too low.

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